Living with Burkitt's

One family's experience with Burkitt's Lymphoma

Cancer Scan Day

SpidermanToday we traveled to Primary Children’s Medical Center in Salt Lake City for Andrew’s first post-cancer scan. Here’s how our day is going:

6:00 a.m. – Rise and shine! We all had to get up a little earlier than usual to arrive at the hospital in time. Madeline is going with us because we have plans with extended family later, and the hospital is on the way.

7:05 a.m. – We are out the door. We should have plenty of time to be there by 8:00, but we’ll be traveling with commuter traffic so it wouldn’t be smart to cut it close.

7:50 a.m. – We pull into the parking lot at Primary Children’s Medical Center. As instructed, we park in a different lot than we usually do, because of construction, and are grateful to easily find a parking space. That’s the upside of early appointments.

8:00 a.m. – We check into the Outpatient Lab. This is our first time here, since clinic and home health nurses were able to draw blood painlessly from Andrew’s PICC line in the past. The PICC line is gone, so they have to use a needle today, and Andrew has no idea it is coming. I wait outside the room with Madeline and we hear Andrew’s protests from the Waiting Room. Chris says that Andrew calmed down quickly after the needle prick was past.

8:15 a.m. – We check into the Imaging Department for an ultrasound. We are early for our 8:30 appointment, so we wait.

8:35 a.m. – Andrew and I are summoned by the tech for the ultrasound. Chris and Madeline stay in the Waiting Room. The tech is friendly and when Andrew gets bored and restless, we distract him by asking him animal questions. Andrew is happy to tell us everything he knows about cheetahs, peregrine falcons, komodo dragons, black mambas and mountain lions while the tech and doctor look at fuzzy blobs on the screen. How they can tell a pancreas from a gall bladder from a tumor is a mystery to me.

Waiting for the doctor

Waiting for the doctor… Check out all that new hair!

9:00 a.m. – We arrive at the Oncology/Hematology Clinic. The sign on the door says that nobody under the age of 18, except the patient, is allowed in the clinic. What to do with Madeline? Thankfully, RSV restrictions have been lifted and she is once again welcome in the play room downstairs. I walk her down while Chris and Andrew check in. She doesn’t mind staying alone. She is the only one of us who misses the hospital.

Back upstairs, we visit with a nurse, our fellow, and an attending physician we have somehow never met before. We learn that Andrew’s white blood counts are low, but not too low to be worried. His ANC, red blood cells and platelets are all normal. His written ultrasound results are filled with the words “normal” and “unremarkable.” That’s what we like to read.

When Andrew has symptoms of anything, we never know if it is from his cancer treatment or if it’s something else. We talk about Andrew’s constant sniffles, the strange way he runs, and his bowels. We know his bowels are cancer related, because they have never been the same since surgery. His sniffles are probably allergies. Andrew has never been athletic, and five months in bed didn’t do much for his muscle tone. A few more months of swimming lessons, soccer and playground time should help his lurpy gait.

Between doctors, I check on Madeline downstairs. I find her in a hair net and face mask performing a “heart transplant” on a stuffed hospital doll under the supervision of a volunteer.

Hospital Playroom

10:00 a.m. – We are finished and still cancer-free! We find Madeline, who is tie-dying a paper lantern with paint and syringes. We stop in the small cafe for a snack. Madeline is disappointed because the cafeteria is not yet open for lunch. She has been craving a cafeteria cheeseburger. I’d promised her one because I was sure we would be at the hospital until lunchtime. We’ve never had a visit to the hospital go so smoothly before.

10:45 a.m. – Finished early, we have time to see the Mummies of the World at the Leonardo Museum! Madeline has an interest in mummies and she has been longing to see this exhibit since it opened in February. It closes next week. It has been a popular exhibit, but because it’s a weekday, there are no lines! The mummies are everything Madeline hoped and dreamed they would be, but I wouldn’t have minded learning about mummies without actually seeing them. Coming from Cancer Land, I found it interesting that they use the same type of CT scanners to examine mummies that they used on Andrew to look for cancer.

It’s a good day!

Leonardo

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If living well is the best revenge…

THEN TAKE THAT, CANCER!

Zip Line

And that.

Zion Ponderosa

And that.

Zion National Park

And that.

Bike

Last week, the kids and I were hosted by the Zion Ponderosa Ranch and Resort near Zion National Park in Southern Utah. I was there to write a review for my family travel blog, and my children were happy to do their part by trying out the zip line, bungee trampoline and climbing wall.

Both Andrew and Madeline fearlessly jumped off the zip line platform at the top of the barn, not once, but twice. In his goofy way, Andrew yelled, “I believe I can fly!” as he jumped into space. And he did fly. I love the look of wonder on Andrew’s face in the zip line photo at the top of this post.

The next day we visited Zion National Park with my dad and hiked the Canyon Overlook trail. Madeline wanted a photo of herself in mid-jump, and then Andrew wanted one too. Notice the shadow underneath his feet.

The last photo is of Andrew on his new bike. Both our kids outgrew their old bikes last year, so we used our tax refund to buy them new bicycles. The next day, I took Andrew to our church’s parking lot to practice riding the new bike, which is slightly big for him. When I see that smile on his face, I think, “VICTORY!”

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